Hi ! It’s so comforting finding a space where parents are familiar with this roller coaster experience . Up until 5 months ago I couldn’t even tell you what the liver did. We got rushed to the hospital in December when my baby was 9 weeks old because of his elevated direct bilirubin and liver enzymes. They were convinced it was biliary atresia and preparing us for that. After 11 days in the hospital ruling out test after test and eventually needing to opening my baby up to finally give us the news that is is not billiary atresia . We were able to be discharged to go home with our baby but still do out atient blood work and monitoring . My baby is now 5 months old and his levels have dropped since we were initially admitted to the hospital but the last two months they have increased . His skin color seems like it changes throughout the day and the whites of his eyes have remained yellow . Has anyone else experienced this with levels fluctuating with no known cause and when does the whites of the eyes eventually clear up ? Thanks in advance

Hi there , great they eliminated BA .... but what does the baby have ? How are they treating ? My son at 9 weeks had same experience... after 10 days of serious tests and surgery , we got a “ most likely “ Alagille confirmed after biopsy was double checked in Philadelphia.Then after about 3 months his numbers have gone down , jaundice is finally gone ....in skin and eyes ....he still has disease but managing much better

Thank you so much for responding . So far after all the other tests they have done and liver biopsy they just know that the liver is inflamed and nothing else . He tested negative for all the viruses, genetic mutations , and any other test they could run so far for disease . They checked his eyes , heart and scanned other body parts and looked for any possible blockage and still nothing . Right now he is on a medication to break down his bilirubin levels and a multivitamin and having me add a special formula to my breastmilk so the liver gets extra fats and vitamins .

I had the same exact experience with my baby. He is now 10 months and we are finally seeing much improvement. No diagnosis whatsoever. We had every single test done including liver biopsy and dna testing and there was no reason for his elevated direct bilirubin and liver enzymes. Not biliary atresia (btw the surgery caused his enzymes and bilirubin to be higher because of the injury to liver cells) No virus. No bacteria. No genetic reason whatsover. We finally had a bile acid test done and that was elevated. We still don’t know what caused this during the first few months of his life but bilirubin and liver enzymes are now on the higher end of the normal range. He is happy and growing and he seems to be getting better. I know exactly what you are going through. Been there with the worrying and the sleepless nights but his GI told me that there is so much unkown about livers and it’s not unlikely for things to clear up on its own. Just hang in there and have faith. Oh yeah at some point they thought it was allageile syndrome which was also ruled out through eye exam and x ray. The toughest part was seeing him getting poked for blood work. After going through all of this, i wish we hadn’t put him through all the pain he had endured (surgery, blood work, eye exam, etc. ) I wish you best of luck and I hope everything will be OK with your baby.

Thank you so much for responding and regaining my hope of it clearing up over time . We did the eye exam and x-ray and echo test and every other test they could do as well as genetic test and still nothing . It’s traumatic to look back and think about how much stuff has been done to your baby and how they still have to be poked for continuous blood work . Did your baby’s direct bilirubin nunbers ever fluctuate up and down as they were getting better ?

Have they tested your baby or yourself for pfic gene carrier? PFIC is related to bile acid and there are pfic 1, 2 and 3 and apparently two other new ones recently diagnosed this year. Also, 25% of all case falls under INH (idiopathic neonatal hepatitis) where no known cause can be determine. Have you had a normal delivery? Any IUGR, asphyxia, anemia, hypoxia that can cause insult to the baby?

Hi ! So we took the test for pfic 1,2 and 3 and all were negative . We are waiting for his cholestasis panel test to come back to see if there are any links other wise still no known cause and his levels have gone up again .

It is more thsn 2 years since my son was check for an enlarge splen and doctors still can tell what is the cause, I guess sometimes we just learn to live with it but I must say things are more calm, wish you the best and pray, that works for me.

I can’t believe I found someone going through a similar issue. My son was born last June and within a week his direct bilirubin had gone up to 2.4...then ensued weekly tests (including the HIDA scan to rule out BA). Before he HIDA scan, his direct bilirubin had gone up to 4.2-4.6. He had to take phenobarbital in preparation and weirdly enough right after the HIDA scan, his direct bilirubin started dropping. Our doctors said perhaps the drug relaxed his liver and pushed blockage out. Either way, it worked so I felt like I should mention it. However, with the high direct bilirubin, his liver enzymes spiked. He’s 11 months now and they have finally normalized except for the ALT which is still slightly above normal but has been going down...because the ALT is still elevated, our doctors want to continue the mission to find the cause but we’ve done all the tests except for the exceedingly rare genetic ones (we had a panel of more common genetic ones done). The doctors also don’t think he actually has any of these rare genetic conditions. So, it’s been an incredibly traumatic, stressful, and difficult road. I completely understand where you are coming from! The only clue we have is that I was on prednisone in my third trimester for a platelet issue and also was adminjer a heavy duty IV of it in the hospital...perhaps that impacted his liver? Hang in there-sometimes the liver just needs time!